Too much excitement just might kill me!
This is Part 2 of Why I Love Gastro – read Part 1 here.
And we cried.
Thankfully, Monkey was finally asleep, so we had a bit of time to get ourselves together and work out what we needed to do.
We each called our parents, and I SMSed everyone to let them know that Monkey’s first birthday party, which had been planned for the following day, was going to be postponed indefinitely. I asked my parents to come back to town to look after our dogs, and they jumped in their car to start the 3 hour trip pretty much immediately. My sister and her husband came down to the hospital to collect our house keys so that we could have sets cut for everyone. When they arrived I wasn’t ready to see anyone, so I sent Hubs out to hand over the keys. Rude maybe, but I’m sure they’ve forgiven me.
Hubs’ parents came down to the ER as well, and sat with us a while – I have no idea how long they were there for, or what time it was. Hubs’ mother took this photo of a very forlorn, slightly blurry little Monkey while they were there:
I think it’s fair to say that Hubs took the news a lot worse than I did. I remember wondering if I was a bad person for not being more upset, wondering if Hubs would think me heartless because I was not a total wreck. We worked out later that this was because Hubs assumed (as many people do) that cancer is an automatic death sentence, but I knew that many kinds could be treated successfully, and we would have to learn more before we would really know anything at all.
Later that day (I can’t even remember if it was morning or afternoon) Monkey was admitted to Ward 8a, which I think was the infant care ward. I guess we must have moved before lunchtime, as I remember Hubs’ parents got us burgers from Hungry Jacks. They tasted like cardboard and ashes in my mouth, but I knew I needed to eat something so I forced it down.
Monkey’s poor voice was hoarse from screaming so long, and he was absolutely exhausted. We had a cot in a shared ward with three other babies, but thankfully there was a recliner for me to sleep in and the nurses were happy for me to co-sleep there with Monkey. The hospital also provided free meals for breastfeeding mothers of children under 1, but I never did take them up on that.
My parents came to visit when they got home, and they brought us dinner. My sister and her husband came some time that afternoon as well, to return our keys and the copies, and drop off a bag of clothes she had thoughtfully packed.
I remember being very sad and depressed that none of the other babies had their parents with them – although in hindsight I can see many reasons why that may not have been possible, and perhaps I should not have been so quick to judge. I remember telling Hubs many times that I would not be going home until I could take Monkey too – and he said he wouldn’t want it any other way.
Monkey was being regularly medicated for his pain at that point – ibuprofen every 8 hours, paracetamol every 6 hours, and codeine every 4 hours if I requested it (which I did). I could tell when he was due for another dose of medicine because he started to get distressed again as they wore off. But with all the medication he was at least able to get some catch-up sleep.
The doctors planned a CT scan for the following day. Because an x-ray is only 2 dimensional, they couldn’t tell exactly where in his chest the tumor was sitting. Since there was no way Monkey would lie still for the scan, it would need to be done under general anaesthetic, and because they weren’t sure of the positioning of the tumor they decided it would be safer to put him to sleep with gas, so that he was breathing on his own.
That night was rough, but surprisingly I didn’t cry. I guess I was so focused on caring for Monkey right then that I just didn’t think much about what was going on. Hubs went home with a list of things to pack for me, and to get some sleep. One of his brothers stayed with him so he wouldn’t be alone. Monkey and I slept in the recliner (so not comfortable) in the room with 3 other babies, and all the wakeups that go with being in a hospital where babies cry and nurses check everyone’s vitals every 4 hours.
The nurses woke me just before 4am at my request, so that I could give Monkey a last feed before he had to fast for his anaesthetic. We gave him some more pain meds at the same time, and I believe he slept then until about 6am. Hubs came early, and brought with him half the house, including our camera, Monkey’s sheepskin, toys, books, pillows and a huge bag of clothes – and birthday presents so we could celebrate Monkey’s first birthday the next morning.
Monkey’s CT was scheduled for 8:30am (I think?). Monkey had a super stylish hospital gown to wear.
It was a Sunday, so everyone involved had been called in especially for this. The medical imaging department was totally empty and dark, and there was a delay as the radiographer or anaesthetist hadn’t arrived as expected (I forget which). But pretty soon everything was ready, all the risks explained, all the consent forms signed.
They let me carry Monkey back to the CT room and I laid him on the table and waited with him as he went off to sleep. He didn’t like the mask and cried (they had warned us this is a very common response) but he was quickly asleep. I kissed his little cheek and then a volunteer escorted me out as tears rolled down my cheeks.
After he recovered from the anaesthetic we went back to the ward, and they arranged to move us into a private room where Monkey and I could have a fold out bed to sleep on.
I think all our family members came to visit that day, at one time or another. Hubs’ mother took the keys we’d cut for them and went to our house to wash nappies and clean up for us, which was wonderful. We asked everyone if they would mind being on a kind of roster to bring us food for however long we had to be in the hospital – of course they all agreed, happy to have some way to help. In between, Monkey wandered the ward, visited the playroom (he did his first ever drawing!), made friends with the other babies, and unpacked a box of tissues all over the cot.
We never did sleep in that bed though. A series of doctors came through that day. The first ones told us the CT results – a large tumor in his thorax. They could tell it had been there a while (and thus that it was slow growing) because it had bent some of his ribs. And it was wrapped around and in between his spine. They needed to get the neurosurgical team involved.
So we waited nervously for the neurology team to come and see us. Eventually the neurosurgical registrar came down to examine Monkey. He tapped his knees and tickled his feet, and asked if we’d noticed anything. We were very scared, particularly as Monkey was looking very shaky on his feet (we hoped it was from being unwell and doped up on drugs). He went away to talk to the team and have another look at the scans.
Then one of the doctors from the oncology ward came to see us. Holy shit. The neurology team had got back to them – there was no neurological involvement THANK CHOCOLATE. Although the tumour was wrapping around his spine, his spinal column was not being affected. She told us that the tumour looked like a neuroblastoma, although she was very careful to add the disclaimers about needing more information. Later one of the nurses told us they also thought the tumour looked encapsulated, although the doctors kept that to themselves – because they needed more information.
And that information would come from a barrage of further tests. She told us that they understood that from our point of view it would feel like getting a firm diagnosis took forever (she was right) but that actually it would all happen very quickly as everyone wanted to start his treatment as soon as possible.
The oncologist told us that in some ways it would actually be beneficial for Monkey if the tumour did turn out to be malignant, because that would mean that it could be shrunk with chemotherapy, whereas a benign tumour couldn’t, and the size and positioning of his tumour would make straight surgery quite dangerous.
She promised to arrange for us to transfer down to Ward 3b, where all Monkey’s care and treatment would be from now on. And then she went off to start making arrangements for a biopsy, a bone scan, an MRI, bone marrow aspirates, an MIBG scan, and all the other baseline tests Monkey would need.
So before long we were packing up to move to another room. The hospital doesn’t have private rooms except for purposes of isolation, but the ward staff put us into a double room on our own (the second bed was empty). I’m sure now that they try to do this for all new patients whenever they can, as that really is a time when you need to be alone as a family. Welcome to the ward.